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The surgeon’s narrative of the surgery has shown up in my online records (translated from Swedish):

Patient under general anaesthetic, flat position. Surgery area washed and dried sterile. Inspected the plate [the grafted area], which looks good, distally somewhat narrowed so we decided to include some skin. At the join between the distal plate and his urethra it’s also slightly fibrotic. Incision with scalpel along the long side of the transplant down to the corpora. Then incision across circa four millimeters distally from the join between the distal edge of the transplant and his own urethra. Cut through the fibrotic area and could excise the fibrosis with a little skin. Then incision across proximally. Stitched the urethra with 5/0 BioSyn running suture. Joined together well over a 12 Ch catheter. Mobilised subcutaneous tissue to cover the row of sutures. No tension in tissue. No twisting. Stitched the skin in two layers, first two individual subcutaneous stitches, finished with intracutaneous MonoCryl running suture. Applied dressing, penis upwards and light dressing on it.

It took me a long time to get to sleep, I think I eventually dozed off around midnight. Then I was woken up by pain from an erection around 2 am. I’d managed to get the nurse to leave one dose of oxycodone by my bed so I could take it immediately and it lasted for the rest of the night.

As usual I got woken up at 6 am to have my temperature taken and then didn’t get breakfast until after 8 am. At rounds they told me that I’d be getting discharged later today. I had to contact my husband so that he could arrange coming to collect me.

The rest of the day was mostly spent hanging around the dayroom. They have surprisingly hard and uncomfortable chairs for a ward where patients often have tender nether regions.

I finally got to meet the surgeon after lunch. He seemed happy with how the surgery had gone. I’m to go back in a couple of weeks to have the catheter removed.

The two-hour drive home was uneventful but almost as soon as I got in the door I had a really strong bladder spasm. Then a little bit later I had one that was so strong it managed to squeeze some urine out around the catheter. I’m hoping the effect of the tolterodine is still building up. I’m avoiding caffeine for a bit anyway, since that can apparently make bladder spasms worse.

I took the train through yesterday for my admission appointment at the hospital. They’d told me I’d be admitted to the ward but it turns out there wasn’t a bed available so they booked me into a hotel in town. That worked out well since I’m sure I slept much better than I would have in the hospital.

At 06:45 this morning the taxi picked me up and it was the now-familiar routine of preparation then being wheeled down to the operating theatre.

This time I didn’t get left in recovery as long, so I was at the ward in time for lunch. I’d made a point of asking the recovery staff to ask them to keep some for me. For some reason I never feel ill after general anaesthetic but I’m usually ravenous after the fast.

I wasn’t in so much pain this time, I just have to call the nurse to ask for more pain relief when I start to be able to feel the stabbing pains through the ache in my scrotum. I think the stabbing pain might be as things shift about down there, it’s one of those body parts that’s seldom still for long.

Lunch was a stew made with doner kebab meat, not something I’d ever had before, it was OK. The crêpes with fresh fruit during the afternoon were actually quite nice though. Dinner was allegedly moussaka but I couldn’t find any aubergine and very little meat.

No sign of a doctor all day. I’d been hoping to ask why I only had a urethral catheter, when I was expecting to have a supra-pubic as well. I’ll have to wait and ask in the morning.

One problem with not seeing a doctor was that I couldn’t discuss pain relief and when I asked one of the nurses she insisted it was too late to make any changes to what had been ordered for me. Of course that meant that they hadn’t given me any slow-release painkillers, apparently being awoken unnecessarily by intense pain during the night isn’t something they care about. I did manage to get Tolterodine to deal with the bladder spasms without the usual arguments though.

My husband drove through after work to keep me company for a while and help me argue with the nurse. Getting adequate long-lasting pain relief for the nights is another point I’ll have to bring up during rounds tomorrow.

So now I’m settling down for the night, hoping my room mate won’t be too noisy.

Tomorrow I’ll be taking the train to the hospital where I had the first stage of my two-stage urethroplasty. After quite a long wait I’m finally getting the second stage surgery.

Also, someone called Rebecca contacted me through the form on this blog but my reply got bounced back because there was a mistake in the address. So if you’re reading this Rebecca, please try again, I’m not ignoring you.

I barely slept due to a combination of nerves and my roommate repeatedly switching his light on and off (he’s elderly and apparently very senile). I was first on the surgery list, so the nurses popped up around 05:30 to remind me to shower and change into the fetching totally-open-up-the-back surgery gown.

Right on time, at 08:30, I was wheeled down but there was a queue in the pre-op area and it was 08:45 before someone came to fetch me and after 9 before I was taken into the operating theatre. I’m pretty familiar with the whole procedure, the staff were very pleasant and chatty, and before long I was out.

As usual my memories from recovery are a bit confused. I’d asked them to call my husband when I got out of surgery and I remember reminding them while I was still pretty out of it, but they never called him. Fortunately he’d guessed about the right time anyway, so he was waiting for me at the ward when I was wheeled up there a couple of hours later.

Compared to my previous urethroplasty I’d say I had a lot more pain on waking up this time. In recovery I needed some extra paracetamol for the aching in my groin and then as the local anaesthetic in my cheek wore off I needed a couple of doses of morphine.

Up at the ward the groin pain was OK, a constant dull ache, but I needed some local anaesthetic gel for my cheek to be able to eat the horrendously dry fish we got for dinner. As always I was hungry rather than nauseous after the general anaesthetic.

The surgeon came to see me in the afternoon and she seemed very happy with how things had gone. She said there were 5 cm of urethra that was completely scarred and unsalvageable but the rest looked healthy. That was a relief, I was worried they’d discover more scarring. The pain in my cheek was explained by them having to take a roughly 5 by 3 cm chunk of tissue to make the graft, much more than last time.

I’m not allowed to sit up fully today and I’m to stay in bed for five days altogether. I was glad to hear that I am allowed to get up to use the toilet, so I won’t have to poop in a bedpan. Small mercies! They left in my suprapubic catheter and I’ve (apparently) got a urethral catheter through the healthy urethra near the tip of my penis, looping out over the dressing covering the graft and then back in at the base of my penis and into the bladder.

So now I’m just relaxing in bed and trying to find ways to keep myself amused. It’s just as well I planned ahead and brought my laptop. I took a photo of the dressing, but it’s not especially interesting.

In my online medical records I can see the surgeon’s full narrative of the surgery, so here it is (translated from Swedish):

Patient in flat position, surgery area washed and dried sterile. Begin to apply gel in the meatus, insert a 14 Ch catheter circa 5 cm then dead stop. Incision in the skin over the urethra. Subsequently with scissors through the subcutaneous tissue. Place urethroplasty hooks. Open the urethra along the midline, where it is significantly fibrotic from the incision and circa 5 cm proximally, then opens up nicely. Decide that I must excise the whole fibrotic area. Measure a strip 5 cm long and barely 3 cm wide. Subsequently the graft is taken from the right hand side of the cheek, draw ut 5 x 3 cm after I marked out the opening for Stensen’s duct. Inject local anaesthetic under the tissue. I separate the graft when I reach 5 cm length. Control of haemostasis with diathermy. Place a compress with xylocaine-adrenaline in the cheek. Trim the transplant. Mesh [the graft]. Place the graft in position and fasten with a few stitches to the edges and also 3 rows of sutures to hold the graft down onto the corpora. Then stitch the skin edges to the graft and urethra, which I spatulated circa 6 mm at both proximal and distal ends. Lubricate the urethra. Lay a mepitel compress over the graft and a 14 Ch catheter in place. The penis is laid up towards the belly and pressure bandaged. Finally checking the wound in the cheek, finish with two single stitches since I don’t want to burn right by the opening of Stensen’s duct.

They weren’t kidding when they said I’m low priority, I’m still waiting on a surgery date. So it looks like it definitely won’t be happening in April. May is difficult because I’ve got to travel for a wedding in the middle of the month and the surgeon says I’ll need a couple of weeks after surgery before I’m fit to travel.

That pushes it into late May or early June and if they can’t manage to fit me in then it’s summer holiday season and there’s basically no chance of getting any non-urgent surgery done until late August.

This is starting to get really annoying. I’m kind of scared to plan anything just in case it clashes with surgery but the hospital are really bad at communicating and unwilling to plan more than about a month in advance.

In the meantime I had my suprapubic catheter replaced. I’d previously had a transparent silicone one but the nurse put in one of the brown rubbery ones instead. I don’t seem to get on well with those. It was irritating my skin, making the wound bleed and I was getting a lot more bladder spasms. So I popped up to the hospital the other day and got them to replace it with another transparent one and things seem better now. Of course the nurse did that thing of treating me as if I was making it all up.

I’ve also been using a flip-flow valve with my catheter for the last couple of weeks, to try to remind my bladder of how it feels to fill and empty. At the moment I’ve still got a leg bag attached to it, since when I need to go it’s usually been pretty urgent and I ended up with bladder spasms forcing urine out through my urethra. I’m hoping to eventually change over to not having the bag. One thing I’ve noticed is that it’s really very difficult, when I’m standing at the toilet with the valve open, not to relax my urinary sphincter and let urine out through my urethra. If I do that too often it gets very irritated and painful.

So I had to drive two hours in each direction for a twenty minute meeting with a surgeon today. Overall it was probably worth it though.

After a quick review of what had already been tried she went over the planned two-stage urethroplasty and gave me some detailed information about the first stage, especially recovery. It seems I’m going to be kept in the hospital for about five days after the surgery, more or less confined to bed.

I’m already on the waiting list, it looks like the first stage surgery will be in April or March. On the other hand, since the stricture won’t actually kill me I’m pretty low priority.

So all of a sudden the surgeon who’d assisted with my urethroplasty back in May became interested in my case again. This time he wanted me to travel up to the hospital he worked at, a couple of hours north, so that he could do a cystoscopy under general anaesthetic and maybe attempt a urethrotomy.

We drove up, turned up at the ward at 09:00 like they asked and then there was the usual hanging around. I eventually got taken down to pre-op around 11:30 and then into surgery around 12:00.

By 14:00 I was back up at the ward. I still had a suprapubic catheter (although they’d replaced the one from two months ago) and no urethral catheter, so obviously they hadn’t succeeded with the urethrotomy.

When the surgeon came round he explained that as far as he could tell the whole grafted area was now blocked and they’d have to do another urethroplasty. This time he’s recommending a two-stage urethroplasty. That’s where they open up the urethra, do a buccal mucosal graft and then leave it open for six months to heal. After that they “tubularise” the graft by sewing the urethra closed again around a catheter. Success rates are apparently very good (I’ve seen figures as high as 98% but in this field there are a lot of not especially good studies) even with complex strictures of the penile urethra like mine.

There are two places in the country that can do this, both apparently equally good. So it’s a choice between two hours north (with a roughly three month waiting time) or three hours west (waiting time unknown). The next step is to pester my local urology department to contact both hospitals and give me a referral.

I had my x-ray appointment a couple of weeks ago. It seemed to go much more easily than previous urethrograms; having a suprapubic catheter makes it much easier to fill the bladder with contrast. Unfortunately it turns out that the urologist had only ordered a voiding cystourethrogram and not a retrograde one.

Cystourethrogram showing my urethra almost completely blocked

That meant that there was too little flow after the stricture to fill the urethra. The radiologist initially concluded that there was a huge stricture all the way from the inner end of the graft right to the meatus. They looked at the pictures again, together with the urologists, and decided that instead it’s two very narrow strictures with about 5 mm between them.

Of course, it’s impossible to tell how long the outer stricture is, or anything else about the urethra after that point.

I’ve been communicating with one of the urologists by email and he seems oddly resistant to the idea of doing a retrograde cystourethrogram. The current delaying tactic is to ask a colleague in another county for advice. That of course means letters going back and forth in the post, so it’ll be at least another week before they hear back from him.

So it seems I’ll be stuck with the suprapubic catheter for quite a while longer. There’s basically no chance of getting anything useful done before Christmas now.

Here’s an animation from the cystourethrogram. You can clearly see how the urethra upstream of the stricture gets stretched by the pressure and how long it takes for the urine/contrast to get past the stricture.

I got a really good night’s sleep back at home, apart from the usual thing of waking up every time I rolled over to make sure the catheter tube was OK.

Back at the hospital I had a short wait until the doctor came on rounds. He said he’d told the x-ray people to make me an appointment in a couple of weeks and discharged me. I returned home with a big bag of catheter and dressing supplies and went back to work after lunch.

The district nurse at my GP surgery called me at work during the afternoon to make an appointment to have my dressing changed. We can mostly handle that ourselves but it will a useful opportunity to get more supplies and maybe some advice on the best way to deal with the catheter.

One problem is showering. No matter how hard we try we can’t find a way of arranging the dressing so that water doesn’t run along the catheter tube and soak the inside of the dressing. That means I need to change it every time I shower and I end up only showering every other day.

The bladder spasms haven’t been as bad this time around, probably because I immediately asked for medication to prevent them. One positive sign has been that I’ve actually been able to pee a little bit, even though the suprapubic catheter isn’t letting pressure build up. That suggests that the inflammation in my urethra is going down already.

I turned up at the hospital on Tuesday for what I’d expected to be an outpatient urethrotomy. The staff on the ward seemed to think that I’d be staying in overnight but bad communication is pretty standard for my local urology department.

After changing into the not especially flattering gown I waited for a couple of hours before eventually being taken down to pre-op. Then I waited for about another hour before I was taken to theatre.

Some time later I was coming round from the anaesthetic and I vaguely remember some discussion about a damaged and leaking suprapubic catheter. They decided to just tape it up to fix the leak.

Once I’d woken up a bit more I had a look and discovered that I had a suprapubic catheter in but no urethral catheter. When the surgeon passed by (very briefly) I asked him if they’d done the urethrotomy and he said they had but ran off before I could ask any more questions. I was still pretty woozy at this point anyway.

I was feeling quite OK otherwise, I don’t seem to get nausea from general anaesthetics. When the post-op nurse said I was ready to go up to the ward I told her I was starting to feel pain in my belly she said she’d tell the ward staff and she’d also ask them to change my urine-soaked bedding.

I had to wait about an hour until they finally came to take me up to the ward and had several more hours of sitting it my own urine before the bedding was changed and I got some painkillers. The nurses kept asking me if I was in pain but then forgetting to do anything about it.

Eventually it became obvious that I wasn’t going to get to see a doctor that day and I’d have to stay in overnight. One nurse mentioned something about them abandoning the urethrotomy but that they didn’t have any more information.

Dinner was a surprisingly decent meatloaf. Oxycontin and earplugs helped me get an OK night’s sleep despite all the snoring in the room.

Finally I got to see a doctor during morning rounds. He said that they’d discovered that my urethra was almost completely closed and they’d given up on the urethrotomy. In 2-3 weeks I’d have a urethrogram and then they’d work out what to do next. In the meantime I’d have to keep the suprapubic catheter.

I explained to him just how angry I was about the whole situation. How I’d written to the surgeon about how severe my symptoms had got, so it shouldn’t have been a surprise, and how it had only got so bad because they’d wasted so much time scheduling my operation. He said he’d arrange for me to meet with the surgeon to discuss it with him and that I should get to go home later that day.

The rest of Wednesday I mostly passed hanging around, waiting to meet the surgeon and to be discharged. When I eventually got to meet him the surgeon was very conciliatory and acknowledged that things had gone wrong but that they were just following procedures. He also explained that I need to wait a couple of weeks before the urethrogram to allow the inflammation to go down.

I then had to wait for the suprapubic catheter to be replaced. Although it wasn’t leaking I’d noticed that it was sucking in air bubbles and I wasn’t happy with the idea of going home with it already damaged when I’m going to have to live with it for weeks. On the other hand, after my last experience I wasn’t looking forward to the procedure.

This time the new catheter went in on the first attempt but the sensation of having my bladder filled to bursting point was just as horrible as before. They’d also not waited very long after injecting the local anaesthetic, so it was a bit more painful too.

Because of all the hanging around it was now too late to discharge me properly but the staff agreed I could go home on “leave” for the night.

I’ve been meaning to write an update for a while but never quite got round to it. Things have got much worse and I’ve been having a lot more hassle with the urology department.

It seems that their efforts to dilate the stricture have (maybe unsurprisingly) instead made it contract more. Over the months since my follow-up appointment it has got to the point where it’s now worse than before my urethroplasty. Peeing is agony and I’m now having problems with suddenly and urgently needing to pee, often at inconvenient times. Sex is just impossible because of the pain of ejaculation.

While this has been going on I’ve been keeping in touch with the urology department about getting an appointment for urethrotomy. At first I got a letter giving me a date to go in for a pre-operative examination but no operation date. Then they cancelled that.

It turns out that the senior urologist had decided (for reasons nobody I’ve spoken to can/will explain) that I should be referred off to the surgeon who’d come here to assist with my urethroplasty. Of course, they didn’t bother to phone or email him to get his opinion and they sent the referral off by post.

Weeks passed without anything useful happening. I emailed the surgeon I’d been referred to and he quickly replied saying that there was no need for him to be involved and that he’d referred me back to my local hospital.

I emailed the surgeon at my local hospital with this news, but apparently he couldn’t do anything about it until he received the referral back, by post. Another week passed and I emailed the local surgeon with a detailed description of my current situation. He forwarded me on to the nurse who schedules operations, asking her to find an appointment as soon as possible.

So I’ve now finally got an appointment for a urethrotomy next week. Of course, given that the stricture is now much worse I doubt that there’s much chance of long-term success. I fear there’s another urethroplasty in my future.

First I got called up to the hospital for a CT scan, to make sure the blood wasn’t coming from my kidneys. It wasn’t, so I got an appointment at the urology clinic. By this time it was the end of June.

Before my appointment I had to record frequency and volume of urination and (separately) how long the first 100 ml of urine took. My trip to the clinic started with uroflowmetry, peeing into a machine that records the volume of urine over time. That showed that there was definitely something wrong, the flow was way too low.

The doctor then did a cystoscopy, or at least tried to. He only got a couple of centimetres in before hitting a blockage, with only about a 1 mm passage through it. That explained the difficulties.

He then said he’d have me scheduled for a urethrotomy (DVIU), without really explaining anything about the procedure. He seemed more concerned about the difficulties of scheduling it, with very little time left before everyone went on their summer holidays, than talking to me. Unfortunately that turned out to be a pattern in the urology department. They didn’t do any further investigations of how long the stricture was.

I made an appointment at the local hospital’s STD clinic, thinking they were a good way to get into the system. They found evidence of inflammation in my urethra (which has been happening for years, without any positive test results for infection) and immediately assumed it was being caused by an STD and wanted me to start on antibiotics while I waited for test results.

Instead of waiting and taking antibiotics that I was fairly sure I didn’t need I made an appointment with my GP. He also immediately leapt to the conclusion that it was probably chlamydia. Fortunately my husband, who is himself a doctor, was there and pointed out that for men any sign of blood in the urine means that you should be referred to urology. The GP grudgingly gave in and referred me.